Last visited

Community Reputation

About NewNicole

Your symptoms seem to be exactly mine....severe fatigue, headaches, muscle pain, dizziness and nausea are my main problems. Some days it's hard to breath. Not because of my asthma but because it feels like it's too much work. It feels like a heaviness. It's not gluten and I don't know of any other AI issues. Does anyone know what AI diseases can have these symptoms and what kind of Dr would I see? By the way my TSH levels appear fine.

I'm very careful about not eating gluten. I've checked for the other food allergies and had both blood work and an endoscope to check and make sure my celiac was in check. So with all that why do I feel so much fatigue, nauseous , dizziness, and headaches. It's not every day, but will be a hit or miss. Will the autoimmune symptoms flare even on the diet?

Nate, I know that story all too well. The medical field is a nightmare to try and navigate. I have learned so much over the last few years. As a child you are told a doctor will help you feel better and that is just not the case. I think most of them want to but they don't have the time and they need to just push you off to the next person. I've learned that the ER will not fix it. They can't diagnose you. Their job is make you live long enough to get to the next Dr. And the GP can only tell you which type of Dr. to go to. A few of my friends are doctors and even with friends in the field it's impossible to navigate, I am my own advocate. I learn as much as I can so I can understand exactly what my Dr. is telling me. And even with all that knowledge and help I am still sitting here looking like I'm pregnant with twins and no explanations. What I do know is that if you are losing weight you need to be worried about cancer. That is a very very common symptom. Although Crohns can also mimic those symptoms. If you are anemic and have weight loss you need to get help. That is a sign of bleeding. But I can also tell you I watched my father in law die from stomach cancer and although I had more pain than he did we shared very similar symptoms and I'm not dying. So you never know. I recommend looking on mayo clinic .com and really researching possibilities. It's reliable and easy to understand. Also the Merck Manual has everything but sometimes it's hard to understand. Then do what I've done here..ask others. I talk to everyone. I believe if we talk to each other at some point we will hit someone who has found the answers . Good luck. Hope it gets better for you

Nate, that is a terrible existence. Most of my big issues went away when I went gluten-free. The bloating is more annoying than anything else. Although sometimes I do get what feels like back labor. I'm pretty sure it's because of constipation though. The Dr. prescribed a medicine that is suppose to work if its IBS but it was not helpful. And he won't do a colonoscopy. He says its a waste of time. Shadowicewolf, I'm not sure what leaky gut is. Is that something the GI would know or is that an alternative medicine issue?

Shadowicewolf, I was thinking thyroid also. I have other symptoms that play into the thyroid, but I can't get the GI to listen. He insists no. My TSH is fluctuating but its not to the point that they will treat it.....Lexi and Nate, in this case misery doesn't love company. I'm sorry you guys seem to be having similar problems. My stomach is flat when I don't eat for a day or so. Once I start eating it bloats. I believe the food isn't moving through. I'm convinced a portion of the intestine is damaged, but I have no way of proving it. Plus I have no idea what test I can ask for to prove my theory. I'm also thinking it could be vitamin D. But again, my Dr. says no. Should I go to a different type of Dr? ....Cyclinglady, I have tried journaling to see if I could find a culprit, but I can't find anything that doesn't do it.how does the four day rotational diet work? That's one thing I could try.

I only eat plan chicken...and I mean plain...plain potato and a couple vegetables. I have researched all the possible food issues and have really taken that off the plate. It doesn't matter what I eat. I can drink water and you can see the swelling as I drink. It only takes a few minutes from each sip for it to swell.

I was diagnosed 3 years ago with Celiac. The diet has improved my life but not fixed everything? My GI doctor ran another blood panel and performed another endoscopy with both coming out negative. So the diet has healed my intestines. However I am having major bloating to the point of people asking if I'm having twins. I have a very flat stomach and the severe bloating is very noticeable. Many drs have even run pregnancy test because they were convinced it was that. I believe my intestines are blocked but my GI says its IBS. He believes I have both Celiac and IBS. Does anyone else have this? It doesn't act like IBS in the fact that its not relieved with a bowel movement and have severe pain with the bloating. I have tried the elimination diet so I know it's not another food causing problems. Could it be IBS and does anyone have any ideas if I should try a different type of dr or where I can go for help. Thanks.
Nicole

When I was 18 my mother found me unconscience with a very high fever. After spending a week in the hospital the doctor believed I had menegitis but really never diagnosed me. After that there were at least 5 hospitalizations for unknown illnesses. Finally at the age of 38 I was diagnosed with celiac disease. My doctor now suspects that when I was 18 I probably had a tropical sprue that caused my celiac to flair. I too have struggled with depression. I can remember being as young as 12 feeling really depressed. I have lost so many friends and there really is no way I could hold down a job with all of my symptoms. No one understands that it hurts to move around, or that it hurts to touch me, and why I have a constant headache, and I can't finish a sentence to save my life, and most of the time I'm overwhelmed. I never talked about any of this. I knew that it would probably isolate me more. Luckily for me God gave me the perfect man for me. He is patient with me and he never complains. For that I am blessed. Now that I have been gluten free for a year I can start to feel the dark cloud lift. My celiac still seems to come and go, but on those days that everything doesn't hurt I don't feel depressed. The world doesn't look overwhelming. I now realize that living with celiac is very difficult on your body and it takes a toll on your mind as well. Most people will never understand all that we face...I guess we can't expect them too. I figure at least now I know what I'm looking at and I can deal with each issue as they come. I hope you find your light at the end of the tunnel.

I have pretty nasty migraine headaches. I was getting them about twice a week before going gluten free. After a little over a year I only have them once a month. I'm hoping it goes down more as I get better. As far medicines go I always use Excedrin Migraine. There have been a few times that I have used Aleve, which is naproxin. A doctor told me that both of these products are good for my situation. I have also been prescribed medicine but I'm not a big fan of taking much so I only take the over the counter and even then I try to avoid it. Taking too much of an of these can eat out your stomach and cause liver damage. So be careful. If you have to take it too often you need to tell your doctor. Hope you feel better soon.

Actually I have had gallstones and can tell you the pain is upper right quadrant. It's almost under your rib cage. When the doctor checks for it he has you breath in and he presses down and goes under the rib cage.....by the way if you have gallstones you will jump off the table at this point. Lol.

So I'm thinking I would have passed the stone by now if that was my problem. I may be wrong with that, but it sounds good to me. Lol. And I'm pretty sure the appendix is lower right quadrant. My pain is on both sides about 3 inches from the belly button and a lot of pain radiating to the back. It could be the cysts. I'm thinking that could be right or it's just my intestines. But for now the pain is still there, but it's a little more bare able . It's good to know you can still get these during the healing process. That means to me that I didn't get hit with gluten and it's probably not something too serious. Thanks for the help everyone.

You went kayaking....that's fantastic. That's on my to do list to. And we just put in a pool so I'm hoping by next summer I will be able to enjoy it. It's almost like a kid in a candy store...you want to do it all right now. Good for IrishHeart. I hope you get to make up for lost time.

Kitty, mania is a great way to describe it. It takes me forever to heal after being glutened too. I hope you bounce back soon. Lvrdeo, I'm so glad that I can give you hope. I know that it's hard to think you will ever feel better. But you will reach a point when you realized that you went up the stairs without needing to rest. I actually went up a few nights ago and did a dance of joy when I reached the top. Hey, it was exciting. Tctwhite, I told a friend of mine that next year I want to do a warrior dash marathon with her. I'm thinking I may be overguessing my physical abilities in this one. But the mere fact that I can consider it is huge. Who knows maybe in a couple years I can climb mount Everest....or maybe not. lol. Irishheart, it's great to feel a little human, isn't it? Who knew someone could feel like this? Srall, I have to tell you that up until about a month ago my 74 year old mother out ran me and she needs a walker. lol.

That's very interesting. I didn't even think about the two being related like that. My mother has a lot of kidney issues. One of her kidneys is functioning at 35% with over 30 stones in it. Plus the other kidney has had a couple stones in it that has caused problem. Her father lost a kidney and the other one failed. With all of this plus my own history of kidney infections and kidney stones I have been a little worried about future issues. If Celiac disease is the cause of my issues than the gluten-free diet should help prevent some of these issues, right? That would be great news. Very encouraging. As for this time, I'm not too worried if it is a stone. I know the routine....drink, drink and drink some more. Thanks so much. This is great information.

Follow Us

Like us on Facebook

About Us

Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!